This policy statement has been developed with advice and guidance from people with Parkinson's, the people who love and care for them, health and social care professionals and other experts.
What do we mean by control, choice and personalised services?
Health and social care services are being reformed across the UK, putting the person in more control of the care and treatment they receive.
The aim is to help people identify their needs and then make choices about the support and treatment available to them.
For example, that may mean choosing which hospital to go to, or being given a cash budget to design a package of support and care at home.
Common terms differ across the UK:
- In social care in England the concept is often referred to as personalisation.
- In Wales reference is made to citizen-centred services.
- In Scotland the framework to deliver more person-centred care is termed as self-directed support.
- In Northern Ireland reference is made to independence and choice which is delivered through joint Health and Social Care Trusts.
What we believe
We believe that everyone with Parkinson's should have the power to exercise choice and control over their care and support needs.
- having choices about health and social made clear in all circumstances
- being equal partners in decisions about their health and social care, supported by a workforce that is competent and knows about Parkinson's
- having access to the right support and good advice and information
- having access to a range of health and social care services available locally and nationally, to exercise real choice
Why we believe this
Being able to choose how and when care and support is provided can help manage life with a long-term fluctuating condition. However, the idea of more choice and control in social care and health is yet to become a reality for many people.
- people not being given enough money to meet their care and support needs
- a lack of information and advice to enable people to make choices
- restrictions being imposed on choices, and reductions in services to choose from
In addition, there are concerns about what happens if people make the wrong choices and whether there are appropriate safeguards.
What's the evidence?
A project we ran in 2010 aimed to identify the experiences of people with Parkinson's in relation to exercising choice and control.
People were uncertain about their rights to exercise more choice and control over the support that was on offer.
They also commented that there was a lack of information about what services exist and their quality and safety. And they were worried about the bureaucracy that might be involved with administering their own budget for care and support.
These findings complement existing research and studies on this agenda.